Activists wait for meeting with Perry. And wait. And wait.

Updated 9:26 pm, Sunday, September 30, 2012

AUSTIN — The last time Gov. Rick Perry met with members of the disability rights group, ADAPT, one brought her grandbaby along. That baby has grown into 4th-grader while activists wait for a second meeting, said activist Bob Kafka.

“We sort of have a measure — as the grandbaby gets older and older, we can see how long it's been since Gov. Perry met with us,” said Kafka, a longtime organizer with ADAPT, which advocates for Medicaid-funded programs that allow people who are elderly or have disabilities to live in the community rather than in institutions.

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Advocating for Medicaid programs can be a tough slog in Texas, where waiting lists are long for community services and Perry is standing firm against expanding the basic program to cover more Texans.

At a protest just over a week ago organized by the Service Employees International Union and Texas Organizing Project, in which ADAPT took part, demonstrators were met with a closed door and state troopers outside Perry's office.

Perry calls the current Medicaid program unsustainable, likens it to the Titanic and would prefer a block grant system to give Texas more flexibility.

Kafka, who has used a wheelchair for nearly 40 years after breaking his neck in an accident with his truck, takes issue with negative descriptions of Medicaid, although he sees the need for reform. He wonders why Perry and others don't emphasize the crucial care the program provides, or the jobs involved. He looks askance at Perry's push for block grants.

“They say, ‘Give us the money, and we will do it and serve more people.' But experience tells you that when Texas gets more flexibility, they don't actually do it. That is the fear that most people have,” Kafka said. “There is a need for Medicaid to be reformed ... But what the governor wants by block grants would basically cap the amount of money, and then what would happen is people who need services would start having to battle for scarce resources.”

Resources already fall short of the need. At August's end, there were 108,825 people on the waiting list for community-based programs providing alternatives to facilities.

Frazier said Perry knows the importance of promoting independence and community–based services, citing a 2002 executive order he signed on the issue. Perry also says Texans should have the choice of state-supported living centers.

Perry's adviser on health issues has met with ADAPT members numerous times, Frazier said, and senior staff members met with them leading into the last session.

But Kafka said there are things Perry can only see in a personal meeting.

“The governor gets good policy-wonk kind of information about the issues. I think what the governor doesn't get is the real life of people with disabilities” and the difference a program can make, said Kafka, 66, a Vietnam veteran who has received VA services and is covered by Medicare. He doesn't use Medicaid himself.

“Even the most sensitive legislator to our issue has sort of a stereotype of people with disabilities ... What it (a personal meeting) does is make our lives real,” he said. “They think we wake up every morning — ‘Oh my God, I'm a disabled person again. I wish there was a cure. I'm going to stay at home.'”

But people with disabilities go to school, have jobs and volunteer, take part in community activities, he noted. And given a chance to meet with the governor, he thinks they might find something more in common.

“He's a big person about freedom and liberty. He talks a lot about it,” Kafka said. “We're for freedom and liberty too, but we need home and community-based services for that freedom and liberty.”